ER+/PR+/HER2+ (Triple Positive) What about BRCA test?

dragonfly1

I was diagnosed with ER+/PR+(both 90%)/HER2+ about 2 1/2 weeks ago at age 41 and the tumor is 1.2 cm. Just met with the surgeon this week and she recommended a BRCA genetic test since I'm so young and don't know some of my family history. Now I'm waiting 10-14 days for the BRCA results which is scary. Is anyone else a triple positive (ER/PR/HER2+) and BRCA 1 or 2 positive as well? The surgeon says there is only a 10% chance it will come back positive. We are waiting to do the surgery until we know the genetic results because it will make a huge difference in what needs to be done...all very scary to deal with all this waiting and wondering...

Omaz

Hi bluedragonfly - I had the BRCA test done and was negative.  Hopefully you will get the test back soon.  I'll add you to my favorite topics so I can see what happens.  Also, the '2010 Sisters' thread is great and if you get taxotere, carboplatin and herceptin chemotherapy that thread is also very active.  Hang in there!

melania

I am triple positive  and i was scared too as I have a daughter , even though my grandma had breast cancer gueess what ??? I got a postcard from my dr letting me know i'm BRCA negative !!!

But even though it comes back positive don't be scared this is only important  for future , I dont think it will effect the decision about the surgery or treatment right now.

dragonfly1

Melania, I'm trying not to worry too much since the BRCA is only a 10% chance but the surgeon says that if it's positive the recommendation will be a double mastectomy and removal of my ovaries/tubes. If it's negative, I'll have a lumpectomy and sentinal node biopsy and then see the oncologist to decide on the rest of the treatment-huge difference! I think that's why I'm so overwhelmed right now and can't stop thinking about it. I think I need to know the BRCA results so I can cope with what I need to do. Having triple positive is enough of a shock! I'll post again when I get the BRCA results back-should be another week...

Omaz: thanks for the info on the other threads. I'll check them out. I'm a little lost with this right now. 

kerri72

Hi abluedragonfly, I am ER+/PR+ and HER2+ and BRCA2+. My only family history was a great aunt who died of BC in her fifties, so I was shocked to find I had the mutation. I know how overwhelmed and scared you feel right now because the treatment path seems so much harder if you're BRCA+. But I've found chemo and surgery to be way more manageable than I thought, and my worst time so far was the first couple weeks after diagnosis, before I started treatment. You're coming through the scariest part now, and it will get easier, whether you test positive or not. 

I had my bilateral MX and salpingo-oophorectomy a month ago, and I swear, the time spent worrying before the surgery was much worse than the 4 weeks since. I didn't need a single pain killer after surgery, I've been working on getting my range of motion back, and I feel amazingly normal again. 

Chances are, you're negative. But if you are positive, you'll have a clear treatment plan and you'll get through it one step at a time. Hang in there! 

dragonfly1

Kerri72, thank you so much for sharing. This BRCA thing can really come out of left field-you had almost no family history! 2 branches of my family tree are completely unknown so I don't know some of my medical history.You're right-it's all the worrying and waiting that's the worst. I think I can cope a lot better once I know exactly which path I'll be on. It's really encouraging to hear how well you are doing after only 4 weeks! It's just good to know that it can be manageable. I should know my BRCA results just after Christmas and will post them. If it's positive I'm sure I'll have a lot more questions for you...

Drim

bluedragonfly - I was diagnosed with triple positive back in January. I also took the BRCA test since I was young (43) and had some of the risk factors. Waiting for the results was definitely tough and I had convinced myself that I was going to be positive. Luckily it did turn out to be negative but there were still more twists and turns in the road (like finding out I was HER2+ and would be needing chemo for sure).

I had a lumpectomy, re-excision, chemo/herceptin, radiation and am on tamoxifen and I have to say that I am one of the lucky ones feeling just about 100%. I had minimal side effects throughout all of treatment. I used penguin cold caps so I didn't even lose my (head) hair during chemo which I think helped a lot in my mental attitude.

This board contains a wealth of information and I encourage you to continue to read up on anything that pertains to you so you can best manage side effects of your upcoming treatment. I am hoping for the best possible outcome for you.

kerri72

abluedragonfly - Chances are, you'll be negative, but if not I'll be happy to answer any questions you have. Hope you can enjoy your holiday! I'll keep an eye out for your results.

LouLou40

I was dx at 39, no family history on my mothers side, but my father was adopted so no family history available.

My medical team didn't think there was a strong enough indication to have the testing done, maybe I should discuss it again as I have daughters.

I had a lumpectomy and nodes removed. 

elaineg

I had the testing done, even with a mother and sister both having BC my % chance of the gene was only about 12%  and it did turn out negative.  I was glad to know the result and put it out of my mind, but my dr said if it was positive same as what they are telling you surgery-wise, because of high risk.  For me it would have gotten done, but yes there was a relief it did not have to go that way!  I was also scared for my kids, if it was positive they wanted them to test right away as well, very hard for teenagers to think of such things!!  Do let us know how it comes out, and check out the TCH board, I bet that is what you have.  For me it has been very doable and I have continued to work.  Ask any questions you wish, feel free to pm as well.  Best wishes!!

dragonfly1

LouLou40: It would be worth considering the BRCA testing but it's a lot to think about. My surgeon considered me a candidate for BRCA testing based upon only 1 factor- my diagnosis at a young age. She said to me "you need to decide, do you really want to know?" because once you know the answer it could have very serious consequences for me and my family. You have similar issues to me. The surgeon said that since I'm now diagnosed with breast cancer at a young age, I have a 10% chance that the BRCA test will be positive. You were also diagnosed very young. In addition, you don't know some of your family history either much like me which adds to the question. The surgeon told me that the even bigger issue with BRCA is the huge risk of ovarian cancer because there is no good way to screen for it and BRCA creates a very high risk of ovarian cancer. That's why the recommendation for a positive BRCA test would be removal of the ovaries/tubes in addition to a double mastectomy.  It's so much to think about...For me, I just have to know so that I can do everything possible to protect myself from both breast cancer and ovarian cancer.  Of course I'm still hoping I'm not in the 10%.

dragonfly1

Elaineg: Since I'm still so new to this and haven't gotten through the surgery and into the treatment yet, is TCH the combo they typically use to treat triple positive? I'm trying to read and stay ahead so there won't be any surprises...I understand chemo is usually involved because of the HER2 component. And how do I find the TCH board so I can start following it? I'm relieved to hear you have been able to work because my work will be an important part of my coping...Thanks for your help.

TriciaK

I was dx at age 46, no history of bc so Onc did'nt deem it necessary to have the test.

 I have two daughter's so currently trying to have this done!

 Tricia 

Omaz

ablue -TCH is used as is a combination of adriamycin/cyclophosphamide followed by taxol or taxotere and herceptin.

A big study of HER2+ patients that compared different treatments was the BCIRG-006 .

elaineg

The board I watch is called: taxotere,carboplatin and herceptin it is under the heading of "chemotherapy before during and after".  As I understand it the T and C are the ones normally given with the herceptin which you should get for being her2+ I think they were the chemos most effective in combo with H.  I am no expert though, I'm sure your oncologist will use the best combo for your situation, and then you should be able to search around and find others in the same boat.  There should also be a thread about people starting chemo the same month as you, on that one people may be on all different kinds of chemo but going through it at the same time can offer a kind word if nothing else.  

Omaz

elaineg - How did you put that link in there so nicely? thanks

elaineg

I didn't know I made it a link haha.  I was too lazy to type it out so I copy pasted from the main area where I have my favorites...  

Omaz

ablue - This is the link to 2010 Sisters. 

dragonfly1

Thank you everyone for the helpful links-I've added them to my favorites so I can start reading them as well. No doubt I'll be there soon enough after surgery as it seems like the standard treatment for triple positive. The only thing holding things up right now is the wait for the BRCA results to make the final decision on what to do. All this info is really helpful because these first 3 weeks following the diagnosis have been a crash course in breast cancer!

melania

Dear  ABLUEDRAGONFLY!

I know u r lost and confused after your diagnosis , It is exactly where i was standing 3 months ago. I was freaking out about every single blood test , scan etc...  now that i have my treatment plan its completely different ,I am going to win this battle and i almost won already!

Being triple positive shouldn't be a shock for you it only means having more options of treatment. Being Her2 positive means agressive but there is the miracle drug Herceptin for it . Being ER and PR positive is a better prognosis , the tumor is slow growing and it's getting it fuel from hormones and there is medication to block those . So don't be afraid, everything is gonna be allright.

As for me the result of BRCA it didnt make any difference surgery and treatment wise for the start .

The Drs didnt also wait for the results to start my treatment cuz I wanna  have a double mastectomy anyways. I started chemo before the surgey so I didn't wait for the results of BRCA . My Dr told me if it comes back positive we will then consider about the future removal of ovaries and its important to know for my daughter but for now it doesnt make any difference. I have to also share the good news that after 4 rounds of chemo before surgery we did a CT scan 2 days ago and there is no tumor left neither do the lymph nodes. I am so happy about it.

Omaz

melania - After 4 rounds of chemo there was no tumor left - FANTASTIC!!!!

dragonfly1

Melania-You're right-every test feels like a shock in these first few weeks. There must come a time where there can't be much more bad news or maybe you just get used to receiving it! This website has helped so much to chat with other women who really understand and can answer questions and reassure me that it's fine. My sister-in-law has triple negative and although she can relate to the emotional impact, she can't help me with the triple positive treatment questions. I am realizing that we are fortunate to have the options for treatment.

 Your course has been remarkable. No tumor now-that's wonderful! 

lago

I too had the BRCA test but tested negative. At the time I was only having a MX but if I tested positive I would have had the BMX… but ended up with a BMX because the MRI showed 4 suspicious areas (one turned out to be LCIS).

I'm not really sure if your individual chances are as high as 10%.  I think that's a general number for all women. It might be a little lower. Typically HER2+ women typically do not test postive but of course not always… more typical to test positive is triple negative so your actually chance is much lower than 10%: You have a slightly higher risk if you are Ashkenazi Jewish (most Jewish people are Ashkenazi).

source: http://www.breastcancer.org/symptoms/diagnosis/genetics/gene_abnorm.jsp
source: http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

Drim

abluedragonfly- TCH is the most commonly prescribed regimen for HER2+ due to the results of the clinical trial Omaz sited. There was also another very large international clinical trial called HERA which I believe was for early stage breast cancer (both node positive and node negative). In this trial they allowed a wide variety of chemotherapy regimens in combination with herceptin. What they found was that herceptin works well with many chemotherapy regimens and particularly well with the Taxanes (Taxotere and Taxol).

After your surgery you will know more about your tumor characteristics (size (which can change after surgery) grade, proliferation index). Based on these factors your oncologist will decide on a treatment that is the least toxic yet effective. I have seen some like me getting Taxotere/Cytoxan x 4 and others getting Taxol x 12 (weekly). I've seen Taxotere/Carbo x 4 but almost always the Tax/Carbo combo is given 6 times (because that's how it was done in the BCIRG-006 trial.

You will learn a lot on these boards. It's not a bad thing to challenge your doctors. They should be happy to discuss the reasons they chose a particular regimen.

stlcardsfan

While I am not triple positive, I am HER 2+, and tested positive for BRCA 2. That was a big shock, no history on either side of Breast or Ovarian Cancer. Neither parent will be tested, so unknown what side it came from. But since I knew, it changed my surgical options. I was 42 when I found out, and as you can tell by my diagnosis line, everything is gone now because of BRCA results.

Latte

bluedragonfly - i am ER/PR+/HER2- and BRCA1+. I don't think the results necessarily affect your immediate surgery concerns (I was sure they would - but my onc and BS and 2nd opinion onc all explained to me the statistics and that having a BMX would not affect my life expectancy).

What the results will definitely affect are: 1. Your family (daughters, sisters, etc.) - they should decide whether they also want to be tested and should undergo more frequent screening. 2. Ovarian cancer - the recommendation for BRCA1+ is to remove ovaries and tubes after age 35 or 40. but there is no need to rush and do this at the same time as the breast surgery. it can wait until after you recover (I am having mine removed after I finish rads). 3. Whether you have a BMX or not, if you test positive you will need to be screened more regularly and carefully.

Be glad you are in the USA - a few of the women from Canada said that it takes over 6 months to get BRCA results there!! Good luck for whatever you decide after you get your results.

Omaz

stlcarsfans - did you get your deport set up yet?

InTwoPlaces

I didn't test for BRCA because my insurance didn't cover the cost and my Ocologist said it doesn't really matter if I was positive or not.

dragonfly1

Surgeon just called with the BRCA results and it was negative!!! I didn't expect it back so soon but that was certainly a relief before Christmas...So now I'm scheduled for the lumpectomy on Jan 7th with the sentinel node biopsy and the option for the axillary node dissection if necessary. I'm certainly glad that this means less surgery at least and I'm so grateful the test results came back much quicker than expected! Guess the next thing will be to wait on the pathology after the surgery but it seems like everyone with triple positive is receiving TCH so I anticipate that as well.

Omaz

ablue - That's great news!!

Drim

Congratulations abluedragonfly - what a great christmas present. Good luck with your surgery on the 7th.